We must promote a conversation that is sensitive to the sexual needs of our aging population

Sex therapist Shirley Zussman insists that “in the long run, sexual pleasure is just one part of what men and women want from each other.” Zussman, still practicing, is now over 100 years old. She has worked with William Masters and Virginia Johnson, renowned pioneers in sexuality research, and is the creator of the blog “What’s Age Got To Do With It?” She is one of countless others who emphasize the importance of sex at every age.

The benefits sex normally yields become more imperative as we age. Senior sex promotes cardiovascular health, pain relief and can ward off feelings of depression and isolation that become more prevalent with senescence. However, when a senior citizen enters a nursing home or long-term care facility, they are often discouraged from having a sexual relationship with other residents.

In nursing homes across the country, elders are being denied their natural right to intimacy. Only four states protect the right for unmarried and married couples to have private visits. 18 states address the right to a private visit by married couples, and the remaining 28 states adhere to federal regulation that does not entitle residents to a private room. Most nursing homes lack a clear policy on sex and relationships. To treat consenting adults as asexual, or to ignore their sexuality altogether is cruel and paternalistic.

Affection between elders is sometimes infantilized as cute, or rebuked by juveniles as gross. This promotes ageism and the stereotype that sex is only for young people. Some seniors reflect that sex and intimacy improve with age. Our culture has a significant lack of understanding about how the dynamics of sex and relationships change as people age. We may not like to think of the sex lives of our parents and grandparents, but we must comprehend and protect their needs when they are under scrutiny.

The Hebrew Home in Riverdale, New York, has pioneered a sexual expression policy, in which residents are encouraged to pursue sexual relationships if they so desire them. Residents even relish in the home’s senior prom, which they say makes them feel young again. The progressive approach was introduced not only to promote comfort, but to set a standard for how staff should approach intimacy among residents and to protect other residents from unwanted advances. The home’s staff supports their residents’ autonomy, with one aide constructing a do not disturb sign.

Of course, geriatric sexual expression is not devoid of complications. The issue of consent in patients with Alzheimer’s and dementia has spawned numerous legal battles. In 2014, Henry Rayhons was acquitted of sexually abusing his wife who suffered from Alzheimer’s. The Hebrew Home assesses consent on a case-by-case basis, allowing even residents with cognitive impairment the right to have sex in certain situations.

Because pregnancy is no longer a concern, many seniors don’t feel the need to use condoms, which is partially responsible for the burgeoning growth of STDs in nursing homes. Care facilities have an obligation to address the sexual health of their residents with proper education and an open dialogue. In Australia, former nurse Elaine White discusses the importance of K-Y Jelly, Viagara, sex aids, vibrators and even pillows to support limbs with residents.

As the generation that sparked the sexual revolution begins to enter long-term care facilities, we must promote a conversation that is sensitive to the needs of our aging population and maintains the autonomy and dignity that comes with sexual well-being.

Everything initially went well with Barbara Charnes’ surgery to fix a troublesome ankle. But after leaving the hospital, the 83-year-old soon found herself in a bad way.

Dazed by a bad response to anesthesia, the Denver resident stopped eating and drinking. Within days, she was dangerously weak, almost entirely immobile and alarmingly apathetic.

“I didn’t see a way forward; I thought I was going to die, and I was OK with that,” Charnes remembered, thinking back to that awful time in the spring of 2015.

Her distraught husband didn’t know what to do until a longtime friend — a neurologist — insisted that Charnes return to the hospital.

That’s the kind of situation medical centers are trying hard to prevent. When hospitals readmit aging patients more often than average, they can face stiff government penalties.

But too often institutions don’t take the reality of seniors’ lives adequately into account, making it imperative that patients figure out how to advocate for themselves.

“People tell us over and over ‘I wasn’t at all prepared for what happened’ and ‘My needs weren’t anticipated,’” said Mary Naylor, director of the New Courtland Center for Transitions and Health at the University of Pennsylvania.

It’s a mistake to rely on hospital staff to ensure that things go smoothly; medical centers’ interests (efficiency, opening up needed beds, maximizing payments, avoiding penalties) are not necessarily your interests (recovering as well as possible, remaining independent and easing the burden on caregivers).

Instead, you and a family member, friend or caregiver need to be prepared to ask plenty of questions and push for answers.

Planning for a transition home should begin as soon as you’re admitted to the hospital, advised Connie McKenzie, who runs Firstat RN Care Management Services in Fort Lauderdale, Fla. You may be too ill to do this, so have someone you trust ask your physician how long you’re likely to be hospitalized and whether you’ll be sent home or to rehabilitation afterward.

Ask if a physical therapist can evaluate you or your loved one at the hospital. Can you get out of bed by yourself? Walk across the room? Then discuss what difficulties might arise back home. Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? What kind of assistance will you require?

Request a consultation with a nutritionist. What kinds of foods will and won’t you be able to eat? Does your diet need to change over the short term, or longer term?

Consider where you’ll go next. If you or your loved one is going to need rehabilitation, now is the time to start researching facilities. Ask a hospital social worker for advice or, if you can afford it, hire a geriatric care manager (now called aging life care professionals) to walk you through your options.

Before Being Discharged

Don’t wait to learn about the kind of care that will be required at home. Will a wound need to be dressed? A catheter need tending to? What’s the best way to do this? Have a nurse show you, step by step, and then let you practice in front of her — several times, if that’s what it takes.

Ann Williams watched a nurse give her 77-year-old mother a shot of Warfarin two years ago after being hospitalized for a dangerous blood clot. But when it was Williams’ turn to give the injection on her own, she panicked.

“I’m not a medical professional: I’ve only given allergy shots to my cats,” she said. Fortunately, Williams found a good instructional video on the Internet and watched it over and over.

Make sure you ask your doctor to sit down and walk you through what will happen next. How soon might you or your loved one recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know if a trip back to the hospital is necessary?

If the doctor or a nurse rushes you, don’t be afraid to say, “Please slow down and repeat that” or “Can you be more specific?” or “Can you explain that using simple language?” said Dr. Suzanne Mitchell, an assistant professor of family medicine at Boston University’s School of Medicine.

Getting Ready To Leave

Being discharged from a hospital can be overwhelming. Make sure you have someone with you to ask questions, take good notes and stand up for your interests — especially if you feel unprepared to leave the hospital in your current state, said Jullie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over all the medications you’ll be taking at home, if you haven’t done so already. Bring in a complete list of all the prescriptions and over-the-counter medications you’ve been taking. You’ll want to have your physician or a pharmacist go over the entire list to make sure there aren’t duplicates or possibly dangerous interactions. Some hospitals are filling new prescriptions before patients go home; take advantage of this service if you can. Or get a list of nearby pharmacies that can fill medication orders.

Find out if equipment that’s been promised has been delivered. Will there be a hospital bed, a commode or a shower chair at home when you get there? How will you obtain other supplies that might be needed such as disposable gloves or adult diapers? A useful checklist can be found at Next Step in Care, a program of the United Hospital Fund.

Will home health care nurses be coming to offer a helping hand? If so, has that been scheduled — and when? How often will the nurses come, and for what period of time? What, exactly, will home health caregivers do and what other kinds of assistance will you need to arrange on your own? What will your insurance pay for?

Be sure to get contact information (phone numbers, cell phone numbers, email addresses) for the doctor who took care of you at the hospital, the person who arranged your discharge, a hospital social worker, the medical supply company and the home health agency. If something goes wrong, you’ll want to know who to contact.

Don’t leave without securing a copy of your medical records and asking the hospital to send those records to your primary care doctor.

Back At Home

Seeing your primary care doctor within two weeks should be a priority. “Even if a patient seems to be doing really well, having their doctor lay eyes on them is really important,” said Dr. Kerry Hildreth, an assistant professor of geriatrics at the University of Colorado School of Medicine.

When you call for an appointment, make sure you explain that you’ve just been in the hospital.

Adjust your expectations. Up to one-third of people over 70 and half of those over 80 leave the hospital with more disabilities than when they arrived. Sometimes, seniors suffer from anxiety and depression after a traumatic illness; sometimes, they’ll experience problems with memory and attention. Returning to normal may take time or a new normal may need to be established. A physical or occupational therapist can help, but you may have to ask the hospital or a home health agency to help arrange these visits. Often, they won’t offer.

It took a year for Barbara Charnes to stand up and begin walking after her ankle operation, which was followed by two unexpected hospitalizations and stints in rehabilitation. For all the physical difficulties, the anguish of feeling like she’d never recover her sense of herself as an independent person was most difficult.

“I felt that my life, as I had known it, had ended,” she said, “but gradually I found my way forward.”

Deep dive looks for causes of disparities in Medicare costs for end-of-life care

Dying in America is an expensive process, with about one in four Medicare dollars going to care for people in their last year of life. But for African Americans and Hispanics, the cost of dying is far higher than it is for whites.

And despite years of searching for the reason, no one has quite figured out why.

Unlike other kinds of health cost disparities, they didn’t find that the difference could be explained by differences in patients’ income, education, medical conditions or other individual factors such as use of hospice. The differences also persisted after they took into account general health spending patterns in a dying person’s area.

The team also took into account specific factors related to the unique circumstances that are present at the end of life – the first time this has been done. These indicators of patients’ own preferences still didn’t explain the differences in cost.

As a result, the researchers conclude that something bigger, rooted in the healthcare system as a whole, must be going on. After all the other factors were figured in, the cost of that last six months of life was $7,100 more expensive to the Medicare system for blacks, and $6,100 more expensive for Hispanics, compared with whites.

“We need to look harder for the causes of disparities in end-of-life care costs, and look at factors on the provider level and health system level, including family dynamics that may come into play,” says Elena Byhoff, M.D., M.Sc., who led the study while she was a Robert Wood Johnson Clinical Scholar at U-M and is now at Tufts Medical Center.

Byhoff and her colleagues, including U-M end-of-life care researchers Kenneth Langa, M.D., Ph.D. and Theodore Iwashyna, M.D., Ph.D., hope that their study will add to the broader conversation about how to encourage good patient-provider-family interactions in patients’ final years, including the difficult but important questions about advance planning for end-of-life care. Whites were twice as likely as blacks and Hispanics to have an advance directive document in place in the study.

New Medicare coverage for doctor visits that include such discussions may help, Byhoff says. But providers must also act on patients’ wishes as spelled out in advance directives, and families must understand and honor those wishes when the patient can no longer speak for him or herself.

Previous work by Langa and others has shown that end-of-life care costs tend to be lower for patients who have spelled out their wishes to limit treatment ahead of time.

A long-term look

Patient preferences have been seen by many as a key factor in end-of-life cost disparities, but are hard to study. The U-M team found a way to take them into account in their analysis by using data from the Health and Retirement Study, based at the U-M Institute for Social Research.

They gathered data from interviews with more than 7,100 seniors over age 65 with traditional Medicare coverage who took part in the long-term, nationally representative study and died sometime during a 14-year period that ended in 2012.

They also used HRS interviews with the seniors’ survivors, which allowed them to find out if the death had been expected, if the patient had discussed their end-of-life treatment preferences with their survivor, and if they had a formal advance directive in place when they died.

Then, the researchers matched each senior’s survey data with his or her Medicare data, from doctor visits and hospital stays to prescription drugs and home, hospice and nursing home care. HRS participants consented to this analysis as part of taking part in the study.

The researchers used an End-of-Life Expenditure Index developed by the Dartmouth Institute to correct for regional variations in care costs for people in their last year.

In all, 78 percent of the people studied were non-Hispanic whites, 14.5 percent were non-Hispanic blacks, 4.7 percent were Hispanic and 2.8 percent were members of other racial or ethnic groups.

In-depth analysis

At first glance, without correcting for any differences between groups, the Medicare costs for black patients in their last six months of life were 35 percent higher than for whites, and costs were 42 percent higher for Hispanics.

Those differences in cost were cut in half after the researchers took into account a wide range of demographic, socioeconomic, geographic and health status differences among the people in each racial and ethnic group. But still, the final months of a black person’s life cost the Medicare system 20 percent more than those of a white person, and the difference was 21 percent for Hispanics.

That left ‘patient preferences’ as the last factor to take into account. The researchers bundled together the presence of an advance directive, discussion of end-of-life treatment preferences, and the fact that a death was expected, to reflect ways in which patients could express their preferences. They did not have access to the advance directives themselves.

But even after factoring these in, the disparities persisted. The Medicare system paid 22 percent more for the care of a dying black senior, and 19 percent more for the care of a dying Hispanic senior, than they did for a white senior who matched them in more than 20 ways.

The persistence of disparities even after taking into account so many factors makes end-of-life care different from other types of care, where factors such as income, education and ZIP code explain much of the difference in outcomes and spending between racial and ethnic groups.

Finding out what factors make the most difference in the last months of life will mean more research. But in the meantime, the researchers hope their findings will help encourage more patients, providers and families of all racial and ethnic backgrounds to start the conversation before it’s too late, and uphold the wishes of the dying when they’re known.

In addition to Byhoff, Iwashyna and Langa, the study team included John Harris, M.D., M.Sc., a former RWJ Clinical Scholar at U-M. All of the authors are current or former members of the U-M Institute for Healthcare Policy and Innovation.

In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly more time in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” Craig C. Earle wrote in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. Most of the doctors who died were white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing — it’s much harder to write a prescription.

A nonprofit is partnering with performance artists to stimulate end-of-life discussions.

By MIRCHELLE LOUIS

Cancer cells

No one likes to think about dying, so we don’t. We avoid the “elephant in the room” and talk around the topic. But what happens when, because of some life-threatening circumstance, you are forced to confront the idea of death? At Cancer Support Community North Texas (CSCNT), we see this happen far too often. Emotions run high, making conversations about death and end-of-life care daunting and overwhelming, sometimes even resulting in decisions that would not have been made if there had been some advance conversation and planning.

So what if we don’t avoid that “elephant?” What if we address it head-on, maybe even laugh about it? Maybe embrace the fact that death, like birth, is part of the natural order of things, and that we’re all going to die someday? In the hope of making the important conversation about death a little less overwhelming, and a whole lot less intimidating, CSCNT has partnered with The Final Acts Project, a community-based health education initiative that serves as a catalyst to stimulate end-of-life discussions, planning and legacy building through theater, creative arts and the humanities.

The Final Acts Project, the brainchild of Deborah Kaercher, Ph.D., an expert in public health and grassroots startups, was created to humanize the end-of-life experience. The initiative uses the performing arts and theater to ease the stress and anxiety of planning for our final days. By using laugh-out-loud, single-act performances and “bucket list” parties, Kaercher’s group encourages us to have the tough conversations we would otherwise avoid.

One performance that we just hosted in Dallas was “The Dead Giveaway,” a one-woman, audience-focused conversation that confronted the character’s impending death from cancer as she gave away her possessions to audience members. The interactive quality of this performance — which Kaercher’s group performs across the country — engaged the audience on a very personal level, encouraging empathy and self-reflection. More importantly, the talk-back following the performance addressed questions from the audience about end-of-life planning and advanced directives.

What particularly interests CSCNT about this unique way of broaching a tough subject is that it not only opens doors to better communication between spouses, families and close friends, but it can also lead to better care from medical professionals, social workers and loved ones. That is, by being better prepared, by being up front about our wishes and expectations, we can help direct the care we receive from others.

Rooted in personal experiences as well as evidence-based findings, the statistics on end-of-life care speak volumes: According to data from the Dartmouth Atlas of Health Care, more than one in four Medicare beneficiaries experiences an intensive care unit (ICU) stay during the last month of life. A quarter of Medicare deaths occur in the hospital, even though, in American public opinion surveys, most say they’d prefer to die at home if they were terminally ill. Medicare beneficiaries also would almost always choose to die without mechanical ventilation or medications that would make them feel worse all the time, and yet that describes the dying process for many in our nation’s critical care units.

The good news is that the times are changing. Medicare is now encouraging people to have a greater say in their desired end-of-life care. In fact, they’re now reimbursing doctors for time spent with patients having these conversations. And, organizations like ours and The Final Acts Project are collaborating to encourage people to take more control by doing advance planning that makes talking to doctors and families about end-of-life wishes easier…on everyone.

CSCNT and other cancer support organizations are already well-poised to have these conversations, with existing comprehensive systems of support in place. Now, the goal is to make it feel OK to “talk death” sooner and more comfortably with the people closest to us. So, let’s do this! Lights, camera, action…!

Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people

In November Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people who have less than six months to live and want to die on their own terms. Whether the initiative is called “doctor-assisted suicide,” “dying with dignity” or “medical aid in dying,” though, will depend on who is paying for the campaign ad.

The language behind the fight is becoming almost as impassioned as the years-long battle over “pro-choice” and “pro-life” that morphed into “abortion rights supporters” and “abortion rights opponents.”

People in favor of the initiative use the terms “dying with dignity” and “right to die” but named their Colorado ballot measure the more neutral “end-of-life options,” although the secretary of state’s office calls it the Medical Aid in Dying initiative. The campaign also uses “medical aid in dying,” which is what proponents predict doctors will call the procedure if it becomes legal in Colorado, as it is in five other states.

Opponents of the proposed law — including many for religious reasons and others who fear it would target people with disabilities — call it “physician-assisted suicide.”

The loaded words on both sides are a case study in the power of language, and how rhetoric — or the art of public persuasion — can shape political debate.

“To communicate and attach ourselves to language is a very natural thing for a human to do, to the point that people will come to blows over ‘physician-assisted suicide’ or ‘dying with dignity,’” said Dr. Christina Foust, chair of the communication studies department at the University of Denver.

“When I think of the word suicide, I think of the words that sound just like it — homicide, infanticide. It has such a negative connotation,” she said. On the other side, “dying with dignity” connotes the ability to choose one’s own death, which is an affront to somebody who “might rest that power in God or a higher power.”

Coloradans probably will get tired of both terms by the election, after they are bombarded with TV and radio ads. But Foust and Dr. Jeff Motter, who teaches political rhetoric at the University of Colorado at Boulder, find it fascinating.

A similar linguistics battle exists over greenhouse gases: Is it “global warming” or “climate change”? There is the intense division over the #blacklivesmatter versus #alllivesmatter, a matter of a single word. And for more proof that language is powerful, consider that the words “date rape” and “spousal rape” weren’t part of the lexicon until the 1970s or 1980s, and their mere existence effected change, Foust said.

Motter, who recently moved to Colorado from North Carolina, has picked up on the way the cannabis industry is “very careful to always use the term cannabis and not pot or marijuana.”

“They are trying to reinvent the story, and the story of cannabis is the story of medical, clothing, the fiber of it, and it’s not about the recreation of it,” he said.

In Colorado’s latest social debate, “death with dignity” and “doctor-assisted suicide” tell two “very different stories,” Motter said. “Is it a story of human compassion or a story of murder?”

“Medical aid in dying” is a more neutral term because it sounds clinical, like most of the vocabulary used in medicine, Faust said. Motter agreed but questioned whether the word “aid” is innocuous because it implies “it’s not just optional; aid is essential.”

Opponents of the measure say the campaign is attempting to “sanitize” the act, in which a doctor writes a prescription for secobarbital that is later self-administered.

“If I was on their side, I’d want to sanitize it too,” said John Stonestreet, who is with the Chuck Colson Center for Christian Worldview. “It’s a hard thing to swallow. But some things are hard to swallow because they should be hard to swallow.”

“Dying with dignity” is a “euphemism for killing elderly and terminally ill patients by giving them a cocktail of toxic drugs,” Stonestreet wrote on his blog. He told The Denver Post “medical aid in dying” doesn’t convey the reality of what’s at stake. The phrase makes it sound as if doctors are only making their patient comfortable as they die, not providing the prescription that ends their life, he said. “A doctor should never do anything to cause death or harm,” Stonestreet said.

But proponents of the measure said “suicide” is a pejorative, shame-inducing word that implies someone has a mental illness and is choosing to die. “People who use medical aid in dying are victims of a terminal illness,” said Barbara Coombs Lee, president of the national Compassion & Choices organization and a board member for the Colorado end-of-life options campaign.

She compared the “choice” that terminally ill patients have to the one made by people who jumped out of buildings on Sept. 11, 2001, to avoid burning to death.

The political movement initially used the term “dying with dignity” in the late 1980s and 1990s, and was successful in passing a law by the same name in Oregon. “We knew the term was biased in our favor — it was our term,” Coombs Lee said.

The term “medical aid in dying” arose because the medical community needed language to distinguish the new practice from the crime of aiding and abetting a suicide — coercing someone to jump from a building or persuading them to overdose. “Those are heinous crimes,” she said. “They should be clearly disassociated from a legitimate and authorized medical practice. Doctors stab people with knives, and we call it surgery. They inject people with poisonous toxins and we call it chemotherapy.”

The ballot measure says two physicians must agree that a person — who must be at least 18 years old — is terminally ill and has six months or less to live and is mentally competent. It also requires that the person self-administer the secobarbital, which historically has been used in low doses as a sleeping aid.

The divisive language has left news organizations considering what is the most objective term to describe the procedure. KUSA-Channel 9 recently informed viewers the station will call it “assisted suicide,” going by the Oxford definition of “the action of killing oneself intentionally.” Others, including The Denver Post, use “medical aid in dying,” noting that the word suicide carries meaning beyond the dictionary definition.

“Language does matter,” Motter said. “Both sides want their frame, and that’s because both sides are creating their story.”